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Sunday, December 31, 2017

As 2017 winds down, winter has
barely started, and I’m ready for spring.

With the cold weather and sub-zero
wind chills lately, I’ve had to psych myself up every time I head out the door
to walk the dog. When my husband asked, “What do you want for Christmas?” the
only thing I could think of was an N-Ferno hood like he bought for himself last
year.

Now, I dress as if I’m going on a
polar expedition every time I walk out the door. As with everything, it seems,
there is an upside and downside to the new hood. The cold doesn’t make my face
hurt anymore, but my glasses fog up and I have to remove them. As nearsighted
as I am, that means I can’t see much. Still, the hood makes me feel like a
Ninja warrior battling the cold.

The best defense against the cold
is layering. I bought a pair of fleece-lined sweatpants, but they didn’t stop
the cold until I wore my Cuddle Duds beneath them.

This New Year’s Eve, not only our
bodies are layered against the cold, our souls and hearts are layered to shield
us from hurt and disappointments. In order to overcome the challenges we face
on a daily basis, we have to pile on layers of accomplishment. To defeat
sadness, we need to find joy. To defend ourselves against the darkness, we need
to seek out light.

As we reflect on the dying year, we
can focus on the bad or sad times, or we can laser our thoughts on the good
times. The same could be said for the past years. A lifetime of years.

For some reason this morning, I
found myself dwelling on my failures and missteps. As I thought about the times
I made stupid mistakes, I found myself sinking into a place I didn’t want to
be. Then, I went on with my day—breakfast, laundry, walking the dog—those
little daily obligations that are there to be done again and again. There’s
nothing permanent to be gained or lost.

As I worked on Jim’s memoir Indelible, I found myself laughing and
crying as I relived that period of my life. The thing is that life is cyclical.
Maybe, roller coaster might be a better description. High highs, low lows,
sudden drops, heart-stopping curves, and the moment of quiet and relief when
one ride ends and before the next one begins.

Tomorrow begins a new year. I’ve
never been much of one for making resolutions because I never saw a resolution
that I couldn’t break within a few days. Instead, I’m looking at more of an
overview.

Over the past several months, I’ve
been paring down my outside obligations. This is a real effort on my part to
free up more of my time to tend to matters important to me.

One thing for sure, 2018 is going
to have a cold, cold start. So tomorrow when I don my Ninja hood, I’ll battle
the cold and face the new year with boldness and optimism. After all, the hood
keeps the wind from hurting my face, and spring will be only 77 days away.

Sunday, December 24, 2017

I saw a post this morning, “Please,
if you have loved ones in a nursing home try to spend some time with them.”
This reminder made me think of the five Christmas holidays Jim spent in a
nursing home.

One of the disturbing trends I
noticed at the nursing home was the lack of family support, especially in the
special care unit. Excuses ranged from “he doesn’t know me” to “I can’t stand
to see her that way.”

The family who never visited missed
the smiles and bright eyes when a loved one walked through the door. When I
visited Jim, some of the other residents felt that I was there to see them too.
I greeted them by name, commented on how pretty someone’s dress was, or offered
to get the attention of an aide when they pleaded, “Will you help me?”

“They won’t let me help you, but I
can get someone who will,” I told them.

Christmas time seemed a
particularly lonesome time at the nursing home while families celebrated at
home. I was looking through some of my Christmas memories in Indelible (memoir in progress). Here are
some of the Christmas memories:

Home for Christmas:

Around Christmas time, we drove
around town after dark to see the lights. The state school had an outstanding
display with Christmas scenes set up in small buildings. Christmas music played
on loudspeakers throughout the drive. Eric, Shawna, and the grandkids enjoyed
riding through the light display too.

I brought Jim home for Whitney’s
birthday party and our annual Christmas Eve get-together. After our Christmas Eve celebration, we drove
Jim through the Christmas lights before returning him to the nursing home.

On Christmas day, I picked him up to have dinner at his mom’s house. We made it through our first Christmas with
Jim living in a nursing home by making it as close as possible to our normal
celebration.

Home for another Christmas:

I brought Jim home
and helped him out of the van and down the walkway. He took his usual seat on
the reclining section of the couch.

Rob and Colby were playing video games on the TV. Before
long, he yelled, “Hey!” and jumped up and started going toward them.

“I
wonder if he wants to play,” I said. At one time, Jim loved video games, and he
played Mario Karts long after he developed dementia.

Rob
ejected the game they were playing, and inserted Mario Karts into the Play
Station. “Here,
Dad,” he said as he handed Jim a control. Jim didn’t seem to remember how to
use it, so Rob passed the other control to Colby and helped his dad maneuver
the one he held.

After a
few races, Jim remembered how to run the car around the track, but the master
of the game was not competitive.

Christmas at the Home:

I
wanted to bring Jim home for Christmas Eve, but it was snowing, so I decided it
wasn’t a good idea. Christmas Day, I brought Jim a bowl of the chili Rob made
for Christmas Eve. He ate the chili and the ham that came on his plate.

While Jim was in the nursing home,
the staff and I did everything we could to make the holiday special. They
decorated for Christmas and provided Christmas cards that they taped to the
doors. I brought a tree and decorated his room.

The
staff drew names and gave Christmas presents to the residents. Jim was wearing
his gift, a Dale Earnhardt, Jr. shirt.

I had planned to take down his
Christmas tree, but the box was still in the car where I had forgotten it. The
rain pelted against Jim’s windows, and I dreaded going back outside. As I
spooned his food, I talked to him. “Well, I’m not going back out in that crap
to get the box for the Christmas tree.” Jim’s eyes moved toward the tree. “I
guess you’ll get to enjoy it one more day.”

We spent fifteen minutes together
Christmas Day 1969 before Jim returned to Vietnam and I flew home. From then
until Jim passed away, we were together every Christmas Day. I cherish the
memories of our Christmases regardless of the setting.

Friday, December 15, 2017

I went to my local post office this
week and bought a sheet of Alzheimer’s semipostal stamps. I couldn’t help but
brag, “My friend, Kathy Siggins, is the one who got the approval for this
stamp. She worked eighteen years to make it happen!”

Often, we claim people as friends
when they do something extraordinary—something that makes a mark in history. In
this case, I wasn’t exaggerating. I met Sarah Harris, Jane Adams, and Kathy Siggins at the first Alzheimer’s forum I
went to in 2001. We forged a lasting and special friendship of the heart.

And guess what? Kathy was already working on the Alzheimer’s
semipostal stamp, and was still working on it at the 2017 forum.

Well, frankly, I didn’t even know
what a semipostal stamp was, or why we wanted, much less needed, an Alzheimer’s
stamp. Since then, thanks to my friend Kathy, I’ve learned quite a bit about
them.

Getting a semipostal stamp approved
isn’t easy. As you’ve heard said before…it takes an Act of Congress. The
Semipostal Authorization Act grants the U.S. Postal Service authority to sell
fundraising stamps to further causes that are in the national interest. They
will issue five semipostal stamps over the next ten years, with the Alzheimer’s
stamp being the first discretionary semipostal stamp. The second stamp, already
approved, is another cause near-and-dear to me: Post Traumatic Stress Disorder
semipostal stamp.

Why are these stamps important?
Prior semipostal stamps have raised millions of dollars. Congress mandated the
first semipostal stamp in history for Breast Cancer Research which raised $86.7 million and a Save Vanishing
Species Semipostal stamp that raised $4.3 million.

The Alzheimer’s stamp costs sixty
cents. The additional cost of the stamp will go toward Alzheimer’s research. As
Congressman Elijah Cummings said at the dedication, this is a “big deal.”

Kathy Siggins has been busy lately.
The stamp was released on November 30 and she was a special guest at the
official dedication of the stamp. The Congressman recognized Kathy for her
work. “You turned your pain into a passion and to a purpose.” He said it would
affect generations yet unborn. He went on to say, “Your name may never appear
on the front page of the Washington Post. You may not even make the local
gazette… By the way, you may never be famous, but there will be people who will
benefit from what you did.”

The Congressman said Kathy was an example of how “one person who instead of standing on the sidelines of life
having a pity party” used her energy to make life better for somebody else.

I’ve followed Kathy’s various
events online: award presentations, television interview, dedication parties,
and celebrations. She takes it all in stride. Kathy has worked toward this day
for so long, I’m sure she is filled with exhilaration.

The stamp, thanks to the unwavering
efforts of Kathy Siggins, will be on sale for two years. Buy early and often! Let
this be the only stamp you buy in the next two years.

Kathy and Sarah (back), Linda and Jane (front)

Yes, Kathy, you are our Alzheimer’s
hero. Speaking for Sarah, Jane, and myself, we

salute you, our sister of the heart, and heap our gratitude and love on you for being the
special person you are.

An old story that came to my mind
this morning: a man asked his friend with a terminal disease, “How does it feel
to know you are dying?” The friend responded, “How do you feel to think you are
not?”

How you cope with terminal disease
depends on how you feel about battling dragons. You can meet the dragon head
on, or you can turn tail and run. Fight or flight. It depends on the kind of
person you are.

Alzheimer’s is a big, ugly
fire-breathing dragon of a disease. It is a terminal disease that can take a
decade or more to reach its ultimate conclusion. That’s entirely too long to be
in “dying” mode.

As if having a terminal disease
isn’t enough of a problem, people often have more than one potentially fatal
condition. Heart disease, diabetes, kidney disease, cancer…the list goes on and
on. While you are battling the big dragon, smaller potentially dangerous
dragons are coming at you from every side.

In real life, you battle diseases as
if you were fighting those mythical dragons, that is, one at a time. Otherwise,
it is overwhelming.

When Jim developed other medical
problems, we dealt with them as they came. I decided it was best to address
each issue as it arrived. My thoughts were to keep him as healthy and mobile as
possible.

Alzheimer’s is a disease that
affects every person in the family. It may affect them in different ways. One
person steps up to be the caregiver—usually a spouse or child. Some may
withdraw while others go into overdrive to provide support for the primary
caregiver. Then, there’s Mr. or Ms. Know-it-All who don’t really want to do
anything but tell everyone else how to do it. Yes, the personalities of those
involved can be quite challenging.

Ultimately, the biggest choice is
whether to give up or go slay the dragon. When you give up, you waste precious
time. Chronic illness of any type becomes a dragon that needs to be slain.

If you look at what you still have
instead of what you’ve lost, you can begin to enjoy life. Cherish those little
moments of joy, and make memories. You don’t want to lose a decade of your life
seeing only the doom and gloom of a terminal disease. Become a dragon slayer!

Sunday, December 3, 2017

I’m not sure where the year went,
but it definitely swooshed by. It’s hard to believe it is Christmastime, even
with two trees and a complete army of nutcrackers scattered throughout the house.

Holiday movies threaten to overflow
my DVR. They all have a similar theme: a person who loathes the holidays, but
magically “gets” what all the fuss is about. A Hallmark movie can turn the Grinch
into a Santa’s helper. Life is not a movie, and not everyone has a magical moment each holiday season.

Holiday sights and sounds greet us
everywhere we go, beginning earlier and earlier each year. All that holiday joy
and ho-ho-hoing can be a bit much for those who are dealing with the unpredictable
nature of dementia.

Three important lessons I learned
throughout my ten Christmas seasons as a caregiver:

(1) simplify sights, (2) simplify
sounds, (3) simplify traditions.

For most of his adult life, Jim was
pretty much a Grinch about Christmas. He thought it had become so commercialized
that it had lost its meaning.

In some ways, dementia made the
holidays a little more tolerable for Jim. In other ways, it only added to his
confusion. One year, I was putting framed family photos in a box to clear the
shelves for Christmas decorations. Immediately after I cleared the shelves, Jim
put the photos back where they had been. That was my first clue that he wasn’t
as crazy about the decorations as I was.

More than the decorations, I think
it bothered him that I was changing his familiar environment. I learned to
simplify the sights of Christmas. The holidays can be entirely too bright for a
person who is confused. And it just isn’t as much fun for the caregiver to do
all the decorating alone and even less fun taking it all down.

Christmas can be a noisy holiday
with traditional parties, dinners, and loud holiday music. When you combine
dozens of conversations with music and piles of food, you are just asking for
trouble. Communicating with a loved one with dementia is an acquired skill. Rapid-fire conversation is hard for a person with dementia to follow and can bring
about a negative reaction. Simplify the sounds of Christmas. Replace noisy
gatherings with soothing traditional music your loved one will remember from his or her childhood.

Simplify traditions by getting rid
of the ones you have clung to through a sense of obligation. If you don’t enjoy
it, don’t expect your loved one to tolerate it. Do the things that make you
happy. If your idea of a good Christmas is a quiet evening at home, then do it.
Most of the stress of Christmas is caused by trying to meet the expectations of
other people. Those who truly care about you are not going to want to add any more
stress in your life.

Simplifying your holiday can bring
the joy back to the season. The spirit of Christmas isn’t wrapped up in
glittery packages or found in a department store. The spirit of Christmas is a
child wrapped in swaddling clothing, placed in a manger. The spirit of
Christmas is love, peace, and a light that shines within our hearts and souls.

Sunday, November 26, 2017

When I was caring for Jim, I showed
great confidence. I tracked his medications, I knew his health history, and we
communicated on an almost subliminal level. Through classes, seminars,
workshops, online training, talking to medical professionals, from the
Alzheimer’s website, and support group, I learned everything I possibly could
about Alzheimer’s disease.

Knowledge was my weapon against
Alzheimer’s. I tracked research and tried to get Jim into promising drug
trials. The major roadblock we ran into was that most required participants to
be at least 65 years old. When I finally found a trial that didn’t have the age
limit, they had a communication requirement. Jim lost his ability to
communicate verbally early on in the disease.

Still, I was confident that I could
find the best medical attention possible, and when it became necessary, I tried
to find a good home for him. Still, I was vigilant, on top of his medical and
personal care. I offered my phone number as their hotline number, day or night.

From time to time, doubt overrode
my confidence. On dark days, I would wonder if I was up to the challenge. I second-guessed
some of my decisions. At times, I felt like a failure. From time to time
resentment battled with fortitude. I mentally beat myself up.

Outwardly, I looked competent, but
inwardly, I wasn’t so sure that I could keep on keeping on. When things were
going wrong, I would wake up with a cloud hanging over me. I never knew if it
was going to rain, or I’d get struck by lightning. It seemed that most of the
time, the sun would come shining through. Often, nighttime doubts were simply
replaced with daytime confidence.

When I took time to breathe, and
think rationally, I realized that I was simply a typical caregiver. In support
group, I learned that others had the same doubts I worked my way through.

I never intended to be the best
caregiver in the world, only the best caregiver I was capable of being. In
retrospect, I realize that I expected much more of myself than anyone else did.

When Jim first showed signs of
dementia, we lived life as normally as we could for as long as we could. We
cherished the good times. You know what I remember most from the nursing home
years? I remember the walks in the park, the trips to Dairy Queen, the times
Jim laughed, the kids and grandkids visiting him, wheeling him around the
parking lot on quiet summer evenings, seeing his eyes light up from time to
time.

Yes, I remember the little things.
Happy moments ramble through my mind like old photographs capable of bringing
smiles or tears, or more often—both.

Thursday, November 23, 2017

I woke up this Thanksgiving morning
without plans. For many years, Thanksgiving meant going home to the Lake of the
Ozarks. That’s where my mom and dad lived. Thanksgiving was the one time of the
year that my brothers and sisters and our families gathered together. Since
then, our family celebrates “Thanksgiving” in September at various locations,
hence no big plans for today.

The memories of those long ago Thanksgivings
crowd my mind on this special day. The table groaned with food, but if you
wanted mashed potatoes, you had to get in line ahead of Andy and Derrick.

Jim always had his video camera. He
“interviewed” everyone and one year shot a video of an impromptu football game.
As he showed the video on the TV someone crashed into a small tree. My dad leaned
forward in his recliner, pointed at the TV, and boomed in his “unhappy” voice, “Hey,
that’s the tree I planted!”

Yes, Thanksgiving holds many happy
memories, and a few sad ones. My dad was the one who insisted we all come home
for Thanksgiving. “You can spend Christmas with your in-laws, but the only way
we’ll all get together is if you come home for Thanksgiving.” The year my dad
died, I had Jim stop at the cemetery to visit my dad’s grave so that he could “see”
me on Thanksgiving.

It was almost unbearably sad the
first Thanksgiving after Jim was in a nursing home. That was a long, lonely
drive with my mind crowded with memories of Thanksgiving past. The ten years
living with Jim’s dementia were the most challenging of my life. Still, laced
throughout that time are many happy memories, loving moments, and tender
moments that will always live in my heart.

On this Thanksgiving morning, I
browsed my Facebook photos looking for one to share. As I went down through the
photos, I realized that I am truly blessed. Photo after photo of events,
reunions, friends, family—old photos, new photos, old memories, recent events.

I have been blessed with love—unselfish
and unconditional. I’ve been blessed with the best family ever. I’ve been
incredibly lucky in love.

My life has taken some detours, but
I know I’m in the place right now where I was meant to be. Of course, I have
regrets, but overall everything has worked out and most decisions moved me
along the path of my destiny.

I thank God that I’ve been blessed
with an optimistic nature. It’s brought me through the bad times and made me
realize that life is cyclical—good times are always ahead.

No matter what I physically do this
Thanksgiving, my heart is full of gratitude. I have health, love, and the best
family possible. All is well.

Tuesday, November 21, 2017

When I took the dog out this
morning, a flock of birds swooped in to sit on the limbs of a bare tree. They
were chirping and flitting around like it was a spring day instead of a prelude
to winter.

What would it be like to be free as
a bird? Most of us are trapped in some way. We are trapped by our mental and
physical health, our inertia, our finances, our obligations, or other life circumstances.

I thought about Jim, who was ensnared
by dementia. The hardest part of him being in a nursing home was knowing that
he had lost his freedom through no fault of his own. Jim had always been a
free-spirited being.

I paused in remembrance of my
brother Donnie who died on this day in 2012. Strokes trapped him in his body, and he, too, had to
spend his last days in a nursing home. Donnie cherished his freedom.

The biggest comfort now is knowing
they are both free from the circumstances that trapped them in life. Jim and
Donnie left their sorrows and afflictions behind, and they soar on eagle wings,
flying higher and freer than any earthly bird.

Monday, November 20, 2017

I was out walking my dog and the
wind howled through the trees, making my face sting. The temperature hovered at
freezing and the wind chill, well, was downright frosty. I cinched my hood on
my coat to keep the wind out of my ears, put on my gloves, and shivered.

The wind made me think of a song
I’d been attempting to play on my ukulele:
“The Wayward Wind.” In turn, the lyrics made me think of Jim. I don’t
know whether he was actually born to wander or whether he acquired “white line
fever” throughout his childhood.

Until I met Jim, I never in my life
knew anyone who had travelled as much as he did or lived in as many different
places. Or in such strange places for that matter: “We lived under that tree”
or “We lived under that bridge.” I would have thought he was making it up, but other
family members told the same stories.

Jim was happiest when he was on a
road trip. I guess it would only naturally follow that when he developed
dementia, he was a wanderer. It required constant vigilance to keep track of
him. He would be out the door and down the road in a flash. He was restless and
relentless in his pursuit of being where he wasn’t.

When Jim’s wandering made him too
much of a challenge for his mom, my mom, and the hired caregivers, I had a
short experience with adult day care. Jim took his guitar and amused himself by
playing and singing—the same song over and over. I suppose the only ones who
really appreciated it were the folks with short-term memory problems that didn’t
remember it was the same song he’d just finished.

Day care only lasted a couple of
weeks. The day they had to track him down and found him on the highway,
carrying his guitar, and headed toward home, they told me they couldn’t keep
him anymore. It didn’t surprise me that even though he’d had enough of that
place, he didn’t leave his guitar behind. His love of music remained in his
heart long after it slipped his mind.

The past seven days have been hard
on the music industry. Della Reese and Mel Tillis died. Sadly, Malcolm Young, AC/DC died from complications of dementia, and David Cassidy, Partridge
Family, who also has dementia, is in critical condition with major organ failure. Famous musicians leave a legacy of songs. No matter how long they are
gone, their songs speak to the hearts of their fans.

A song can express heart emotions
for us that we cannot express otherwise. Music provides a direct link to our
strongest memories. My mother sings a song she refers to as “Jim’s song.” When
Jim sang “The Way I Am,” he sang it from his heart. One thing I can say for Jim
is that he never pretended to be anything other than what he was.

Jim was happiest when he was
playing music with his uncles, or cousins. He often referred to these jam
sessions as “picking and grinning.” It didn’t matter to him if he was playing
his guitar, a mandolin, a banjo, or a fiddle. If an instrument had strings, he
played it.

Jim loved the traditional gospel
songs. I will never hear “Lord, Build Me a Cabin in Gloryland” or “Old Country
Church” without thinking of Jim. We went to a country music show in Branson
where several people played and sang old gospel songs in the lobby prior to the
evening’s extravaganza. Jim was already having trouble speaking by then, but he
sang every word with them.

Sunday at church, the minister
asked us to join him in singing “Jesus Loves Me.” I fought back the tears and
sang along. When Jim was having a really bad day and I was trying to get him to
sleep, I sometimes sang “Jesus Loves Me” to him because I knew he would
remember that song. His lips moved and he mouthed the words soundlessly, and I
think he found comfort. It was one of his heart songs, and because of it, he
was able to travel in his mind to a simpler time and a place far, far away.

Friday, November 10, 2017

Veterans Day is November 11, but
this year the holiday falls on November 10. At least this year, Americans will
think about and honor our Veterans for two days instead of one.

The Capps family did double duty
bringing the veteran’s perspective to Morgan County Schools. My brother Tommy,
an Army Vietnam veteran. spoke at Versailles High School and my nephew Charles,
a Navy Iraq veteran, spoke at Stover High School.

The reality of war veterans is that
the majority of them are wounded warriors. Some wounds are undeniable because
they are visible, like Tommy’s wounds. Others have invisible wounds inflicted
by chemicals and other environmental factors. Agent Orange and chemical
exposure during other wars can be passed onto descendents, abroad and here at
home.

Equally debilitating are the heart
and soul wounds that battle within. Twenty-two veterans take their lives each
day. I hate to even think how many contemplate suicide or attempt suicide. I
know that Jim contemplated it many times.

There is no hard and fast evidence
that Jim’s dementia had anything to do with his military service in Vietnam. I
do know that he battled depression throughout most of his adult life. I also
know that he was exposed to Agent Orange. I know that he suffered from PTSD,
including flashbacks. I know that he had two complete mental breaks that
required hospitalization. I know that he took medication that had long-term detrimental
effects on his health.

Exactly how much Jim’s military
service contributed to his dementia may seem to be more intuitive than proven. Although
I had no luck convincing the VA that there was a connection, science is
beginning to catch up with my conviction.

Several studies on veterans who
have PTSD (or PTSS as it is now known) indicate that they are twice as likely
to develop dementia. When you consider that 30% of Vietnam veterans and 17% of
Iraq and Afghanistan veterans have PTSS, the dementia connection needs to be
seriously addressed.

Our veterans deserve more than a
pat on the back or a “welcome home” in recognition of their sacrifices for our
country. They deserve the best health care for all their visible and invisible
wounds. As a nation, we have an obligation to reduce the risk of suicide,
dementia, and other health problems with a connection to military service.

Veterans are the folks who laid
their lives on the line for the rest of us. Some came home broken and it is
high time that the government does everything in its power to make them whole.

Can we ever have war without fatalities
and a host of wounded warriors? Will the world ever be at peace?

Until that utopia, we must take
care of our veterans. Every day needs to be Veterans Day.

Sunday, October 29, 2017

Fall is in the air, and when I take
the dog out first thing in the mornings, I see frost on the ground and ice on
the stock tank. Each day, I think I’m dressed warm enough for a winter’s day,
but haven’t convinced myself that I’m to the point of needing gloves and a
stocking cap. At least that’s how I feel until the wind hits me.

Halloween will be here soon so my
thoughts turn to things that scare me. I know I’m in the age group where
Alzheimer’s isn’t even considered “early onset” anymore. I’m now included in
the scary statistical risk for women over age 65. One in nine people over age
65 have Alzheimer’s disease. The really scary part for me is that of the 5.2
million people with Alzheimer’s, more than 3 million are women.*

A few weeks ago, I wrote about
showing up at grandparent’s day a day early. Now, I’m so paranoid about
appointments that I keep them in electronic form and write them on the wall
calendar. Yet, I still second-guess myself. I’ve been bringing the music for
line dancing class while our fearless leader is recuperating from knee surgery.
I arrived early to set up the equipment, and no one was there. I glanced at my
watch to double-check the time and saw that it was still ten minutes early. I mentally
assured myself it was the right day. Eventually, everyone showed up and I
breathed a sigh of relief that I was at the right place, at the right time, and
on the correct day.

A few days ago, I opened the
microwave and started to put the gallon milk jug in it. “Oh, my gosh!” I said. “What
was I thinking?”

The next day, I shook creamer into
my cup because it mixes in better when I pour the coffee. I opened the
refrigerator, grabbed the milk, and started to pour milk on my creamer. Wouldn’t
that have been an interesting drink?

Yeah, Halloween is a time to think
of scary things, like Alzheimer’s and the ten warning signs of Alzheimer’s: (1) Memory loss that disrupts daily life. (2)
Challenges in planning or solving problems. (3) Difficulty completing familiar
tasks at home, at work or at leisure. (4) Confusion with time or place. (5) Trouble
understanding visual images and spatial relationships. (6) New problems with
words when speaking or writing. (7) Misplacing things and losing the ability to
retrace steps. (8) Decreased or poor
judgment. (9) Withdrawal from work or social activities. (10) Changes in mood
and personality, including apathy and depression. *

Scary behavior aside, this
Halloween has been special. My brother and I finally put our twisted tales and
yarns together into a book titled Apparitions.
The goal was to have it finished in time
for Halloween. Well, we made it in some respects since the e-book and paperback
are available online. I don’t have the copies I ordered yet. There was a delay
while we tried to get the cover to suit us. Another delay was my reluctance to
let the book go live because of my fear that I’d made a stupid mistake during
the editing process or missed a simple error.

My husband assures me that my mind
tends to jump ahead rather than staying in the present. It might have to do
with mental overload. I have too many appointments, obligations, and an out of
control to-do list. Multitasking has turned into multi-taxing on my poor
stressed out brain.

Halloween is a time of trick or
treat. I’ve decided to treat myself to peace of mind in regard to turning into
an absent-minded retiree. At least with my optimistic attitude, I believe my
occasional odd behavior is from being distracted rather than a sign of early
stage dementia. At least, that’s my story and I’m sticking to it.

Monday, October 23, 2017

How often have you seen an
advertisement—weight loss, growing hair on a bald head, miracle cure—where the
final statement is: Individual results may vary. Yep, that is the catchall
phrase to get the advertiser off the hook when the product miserably fails to
deliver.

It is not just advertisers who
promote the cautionary tale about individual results. When you develop a
disease, you may often hear the same comment from your doctor. Along the way,
they’ve tried to steer you toward the healthy path, but they know that some
people defy all the odds, which they refer to as statistics.

I participated in a video
conference recently, and the speaker talked about lifestyle as a way to
increase your chances of attaining overall health for your body and brain. Of
course, the ideal situation would be a strictly healthy diet, an exercise plan,
and mentally stimulating activities.

The downside is that as humans we
can’t always resist the donut, we’re too time crunched or physically drained
for exercise, and rather than read a book, it’s much easier to zone out in
front of our favorite TV program.

Although population in general
would benefit, we all know individual results may vary. We all know the person
who smoked, ate junk food, and never left the couch for anything more important
than getting a beer out of the fridge. We may write off these individuals as
having a death wish, but sometimes they just go on and on until they reach a
ripe old age. On the flipside, we all know people who eat right and exercise
but develop cancer or die from cardiac arrest. Individual results vary.

Yes, there are exceptions to known
statistical risk factors, but as the researcher pointed out: Most of us fall
within the middle and how we monitor our health can make a life changing
difference. Lifestyle may be our best defense against Alzheimer’s disease and
other dementias.

Genetics and environment play a
major part in our overall health. If we are born with genes that increase our
chances of developing Alzheimer’s, we can’t change that. In some cases, we can
improve our environment. Where we are born and raised can affect our health
throughout life. If we live in an area with air pollution, contaminated drinking
water, or unhealthy living conditions, it increases our chances of developing
life-changing diseases.

The bottom line is that no pill or
treatment is a cure all for any disease. Hopefully, we are on track to find an
effective treatment for Alzheimer’s, but even when that happens, how we take
care of our bodies and minds can make a huge difference.

When individual results vary, we
should strive to make sure our individual results vary toward a positive
outcome.

Wednesday, October 11, 2017

I left early for grandparent’s day
at my grandson’s school so I could go by and visit my mom. Delays can happen
when driving more than an hour, and I didn’t want to be late for the 2:10 event.

I had called Mom as I pulled out of the driveway.
“Would you like to go with me?” I asked.

She was having lunch with my
younger sister. “We’ll be home by the time you get to town,” she said.

When I arrived, my mom and sister
were at Mom’s house. We had a nice visit and a photo op before Mom and I headed
to the school. We arrived at the school at 2:00 p.m. and I sent my
daughter-in-law a quick text to double-check the grade he was in. “I think he’s
in the fourth grade,” I told Mom, “but one year I showed up for grandparent’s
day and went to the wrong room.”

My daughter-in-law confirmed that
he was in the fourth. “We’re here!” I texted.

Mom and I walked up to the door and
pushed the buzzer. “We’re grandparents,” I said. The door unlocked and we went
inside. A woman behind a desk motioned for us to come inside the office.

“Grandparents day is tomorrow,” she
said, holding up a flyer as proof.

I immediately thought of
Alzheimer’s sign #4 “Confusion with time or place.” Just as quickly I remembered that, occasionally,
messing up an appointment is a normal age-related change. Whew! Dodged that
bullet.

“This is what happens when you
retire,” I said. “You lose track of the day of week or the date.” Today was the
tenth and grandparent’s day at school was the eleventh. Close, but no
horseshoe, as the old saying goes.

“You are exactly on time,” the
woman said as if I needed some reassurance that I wasn’t completely in la-la
land. “You’re just a day early. You can come back tomorrow.”

“I have an appointment tomorrow,” I
said. Yep, for 2:15 p.m. no less.

“We have practice tomorrow,” my mom
said. She and other family members play music at area nursing homes and they do
a final run through before the week begins.

“Could we at least see him?” I
asked.

She buzzed his room and in a few
minutes, he came down the hall. We had hugs and a photo op.

“Enjoy visiting with your other
grandma tomorrow,” I said.

I couldn’t help but think going a
day early was a lucky mistake. I was able to spend time with my mom and saw my
grandson. Grandparent’s day came a little bit early this year.

Wednesday, October 4, 2017

I can remember a co-worker who
always said getting old was better than the alternative. She did have a solid
point.

Unfortunately getting older does
have its pitfalls. A good day can be defined as one when something isn’t
aching. It seems that the older we get the harder it is to jump out of bed in
the morning. I tend to drag myself out of bed and head toward the coffee pot.
After the first cup and a few stretches, I feel almost human again.

It scares me to think that I’m the
age now when Alzheimer’s isn’t even considered early (or younger) onset. Nope.
I’m solidly into the age where if it happens, it falls into the statistical
data as the ages of greater vulnerability.

Although Alzheimer’s is a disease
and not a normal part of aging, age is still the biggest risk factor. If that
news wasn’t bad enough, two-thirds of the Americans living with Alzheimer’s are
women.

A gene called APOE (apolipoprotein
E) regulates lipid metabolism. Less than five percent of the population has
APOE2. This gene lowers the risk of Alzheimer’s. The most common variant is
APOE3 which does not affect risk of the disease.

The culprit is the e4 version that
increases the risk of Alzheimer’s disease. Most of us don’t know whether we
carry the e4 version of APOE. Jim’s neurologist asked to do genetic testing on
Jim and I gave permission. He had one copy of APOE4 and one APOE3.

Gender further increases risk,
especially for women. A study at Stanford University Medical Center in
California used brain-imaging studies to determine that a woman with one copy
of APOE4 has a much greater risk of developing Alzheimer’s than a male with one
copy.

A study at the University of
California found that women with a genetic predisposition to develop Alzheimer’s
disease do so at an escalated rate between the ages of 65 and 75. It is
believed that the reason the risk increases for women in this age bracket is because
menopause and decreased estrogen begin at about 51.

If you inherit two copies of the
APOE4 gene, your risk is even greater. This too, is not a complete determinant
since some who have two copies do not have Alzheimer’s and some who don’t have
the e4 version have Alzheimer’s.

People whose parents have dementia often
fear developing dementia in their older years. My dad died when he was my age,
but my ninety-year-old mother is as sharp as ever. I believe part of Mom’s
success is that she is active and takes almost no medications. In fact, we’re
pretty sure she’s in better health than my siblings and I are.

The good news is that APOE4 isn’t a
doomsday diagnosis. The bad news is that I have entered the ten-year period
when women experience a leap in developing Alzheimer’s disease. More good news
is that I at least plan to stay active like my mom. My goal in life is to find
that fountain of youth she found and drink my fill.

Thursday, September 28, 2017

Here it is autumn already. The
season is catching up with the dead looking leaves on the trees attacked by the
Japanese beetles. Hopefully, we’ll get some nice fall colors out of the
remaining leaves.

The yard is starting to look like
autumn. We are surrounded by cornfields that have turned golden brown as they
quickly approach harvest time.

Yesterday was the first day it was
cool enough to think of dragging out the autumn wardrobe. At least it was a day
I didn’t feel like I had to wear a sleeveless blouse to keep from melting. We
even had a gentle autumn rain.

I wore a hoodie this morning when I
walked the dog. With her long hair, she seemed to be enjoying the autumn crispness
too.

I kept telling myself that I need
to get in gear and drag out my fall decorations. Last year, it was nearly Halloween
before that happened. Unfortunately, decorating often falls into the “I can do
that tomorrow” category. It seems each day I have a list of things that have to
be done that day and can’t wait until the next. Or worse yet, the things that
should have been done last week…or the week before that.

Catching up happens every year
after Walk to End Alzheimer’s. I have a lot of catching up to do. I tend to let
everything else slide in the last few weeks before Walk, and often in the two
weeks following. That means the last week in September and the first week or so
in October are times to put on a different hat and catch up on everything I put
on hold during the walk.

Every year I look at my September
calendar and think…it won’t get busier than this. Then, I flip the page to
October and have to take deep breaths before I admit that I’m not going to be
caught up until at least November.

I have several days on my October
calendar double-booked and two days triple-booked. I have some serious choices
to make. Throw into that the unknown, unexpected things that happen and October
just got really, really scary.

I can’t help but wonder what I
would do if I ever did actually catch up. I kind of think that’s never going to
happen. Makes me think of what my sister-in-law used to say, “The hurriered I
go, the behinder I get.” That just about sums it up.

Thursday, September 21, 2017

We didn’t get any decent tomatoes all summer long. Harold
left for town this morning and gave me a call. “We have three or four semi-ripe
tomatoes.”

“Okay, I’ll go out and pick them,” I said. I walked out to
the potted tomato plants expecting to pick a few and bring them inside. Ripe
tomatoes were everywhere. The saying, “Good things come to those who wait”
popped into my head.

You wouldn’t think that I’d even think of this expression
since patience is not one of my virtues. Sure, I have a lot of good qualities:
empathy, a good work ethic, general optimism, and so forth. Patience does not
make that list. Nope, not even as an afterthought.

My lack of patience gets me into trouble sometimes. I get
really frustrated when I’m trying to open a file on the internet. I absolutely
hate waiting for that little circle to stop spinning. Or for an ad to pop up
and obstruct my view. Life is too short to wait, and wait, and wait. Often, I’ll
just close it and figure that I didn’t really need to know the latest “shock
and awe” news story.

Patience. I know men don’t usually have any patience, but
everyone expects a woman to have it. I used to have a certain amount of patience,
but I guess years of budgeting my time has zapped what was left of it.

My saving grace is stubbornness, or bull-headedness if you
ask certain people. When I don’t have the patience to complete a task, I’m
stubborn enough to see it through.

I’m starting to lose patience with a cure for Alzheimer’s.
People die every day from Alzheimer’s and related dementias. We can’t find a
cure soon enough to suit me. I can’t wait for the first survivor.

We thought about that first survivor at the Walk to End
Alzheimer’s this year. During the opening ceremony, we hold high pinwheel flowers
in various colors to represent the walker’s connection to the disease.

I always choose a purple flower because I’ve lost someone to
the disease. Yellow is the color for caregivers, blue for those who have the
disease, and orange for those who are supporters. This year, a new flower was
introduced. Two young children held up the white flower that represented our
hope for the future. The white flower is for the first survivor. That person
does not exist at this time.

After the ceremony, they gave me one of the white flowers. I
hope before much more time passes, I can take the white pinwheel back to the
walk and personally hand it to the first survivor in our town. I hope to see
our walk filled with white pinwheel flowers.

No, I will not patiently wait for the first survivor. I’m
going to be walking, advocating for more research funds, and doing all I
possibly can to push, cajole, and become the squeaky wheel.

Patience is not one of my virtues. I might as well make the
most of my shortcoming.

Monday, September 11, 2017

In 1998 the year of my first walk, four
troublesome years had passed from the time I had noticed Jim was having trouble
remembering basic information. Jim had always had an amazing recall for numbers
and dates, but had forgotten his social security number. I thought that
strange, but I didn’t push the panic button until he admitted he didn’t know
his birth date either.

After testing, it was determined
that Jim had dementia of the Alzheimer’s type. Jim, of course, insisted he didn’t
have “that,” as he referred to it, but when we saw an article about an upcoming
“Memory Walk” in Sedalia, he wanted to go. “I have memory problems,” he said. I
had already signed up for the walk and had raised some money, but since Jim
didn’t have “that” I thought he wouldn’t want to go.

We arrived at the first walk to
discover we were the only people from Sedalia. The other walkers were Helen and
Chuck from Slater, Joetta and Penny from the Alzheimer’s chapter office in
Columbia, and Penny’s dog, Victoria. Six people and a dog, and I knew all their
names—including the dog.

Saturday, was a different story. More
than three-hundred walkers and thirty-six teams crowded into the highway
gardens. We had professional DJ’s, a super sound system, corporate sponsor
booths, volunteer shirts, a professional photographer, and pinwheel flowers. We
even had an official playlist of songs. At the first walk, the closest thing we
had to music was Helen’s hunting horn. The highlight of the walk was going into
the VFW where a veteran asked Helen to blow her horn. After she blew her horn,
they took up a collection to add to the walk total. The grand total was $600,
almost all of which I had collected from co-workers and friends.

To make my twentieth walk special, I wore my 1998 shirt and my team wore the 1999 - 2017 shirts. We knew they weren’t
exactly vintage shirts, but my niece and I laughed about struggling not to call
them vintage. Old, I guess was the correct terminology.

Yesterday, Facebook posted a “memory”
from twelve years ago, September 10, 2005. My son, daughter-in-law and their
two kids were at the Memory Walk wearing 2005 shirts. I smiled at how small the
grandkids were, and then I realized that was how small they were when Jim died
earlier that same year. It made me incredibly sad to realize that they lost
their grandpa at such a young age, and Jim missed out on seeing his grandkids
grow up. Family was everything to Jim. He loved being a dad and was over the
moon about being a grandpa.

It’s hard to believe that I’ve been
doing what I’ve been doing for twenty years. I logged my shirts before I took
them to the walk to make sure that all the years were covered. Some of the
shirts did not have a year and I had to look at photos to determine which years
went with which shirts. Then, I identified the shirt by what it said: Move; We’re
on the Move; WALK (in Alzheimer’s Logo).

After the walk changed from the
Memory Walk to the Walk to End Alzheimer’s, the message on the shirt conveyed increasingly
positive meanings. The 2017 shirt, Together We Can End Alzheimer’s, told its
own story. When we work together, we can change impossible to possible.

It is shocking to realize that my
kids are older than I was when Jim developed those first troubling symptoms. Time
passes so quickly. Lifetimes come and go. There have been times in my life when
I felt I was walking alone, but more often, I’ve relied on and been supported
by others. Together, we can accomplish anything. Together, we can accomplish
everything. Together, we can end Alzheimer’s.

Sunday, August 27, 2017

Today would have been Jim’s 72nd
birthday. In honor of his birthday, I wanted to share some of my memories of
Jim before dementia.

Jim’s uncle introduced me to Jim on
a hot summer day in 1968. I don’t know if it would qualify as love at first
sight, but it was darned close to it. He was drafted in September and after
training, he left for Vietnam in May of 1969.

Jim liked to say he won me in a
craps game. He came up with the idea that he could take R&R in Hawaii, and
I could fly there and we could get married. The only problem was, neither of us
had any money. Jim decided to take what money he had and shoot craps to finance
a honeymoon. Sure enough, based on the roll of the dice, he had enough money to
fund the trip.

We were married at Fort DeRussy on
December 20, 1969. It was a small wedding with the chaplain, Jim, and me. The
witnesses signed our marriage certificate before the nuptials so they could go
home. Jim, being Jim, refused to wear his uniform for the wedding. He bought
some “civvies” for the ceremony.

During the early morning hours of Christmas
Day, Jim went back to Vietnam and I flew back to the states. We began our lives
together when he returned home April 5, 1970. He still had a year’s obligation
to Uncle Sam so we moved to Manhattan, Kansas.

The couple who had the smallest
wedding also had the smallest apartment: one small room with a bathroom. We had
no air conditioning, and I mostly remember the sweltering heat and the two of
us sleeping on a twin bed. In early fall, we moved to a bigger apartment in the
same house.

Jim was a family man. He loved
spending time with his family and my family. We traveled home about every other
weekend. We always drove an old clunker because Jim was a genuine shade-tree
mechanic and could keep any vehicle on four wheels running well past its prime.

The army didn’t pay much so we
learned early on to budget our money. We always had a savings account for
emergencies. Our entertainment was inexpensive. Jim would play his guitar and
sing, we went for long drives, and we spent a lot of time at Tuttle Creek
because Jim loved to fish. If we really wanted to splurge, we went to the
movies or ate at Dog and Suds.

Glen Campbell’s song said “Manhattan,
Kansas, Ain’t No Place to Have a Baby,” but we were excited to become parents.
Eric was born at Fort Riley Hospital and cost us a whopping $7. When Rob was
born two years later at Bothwell, we sold my car to pay the $700 bill.

Jim loved to travel, and we often
made trips to Oregon to visit relatives and his childhood places. Later, we
went to Colorado every summer to camp in the Rocky Mountain National Park.
Jim was happiest when he “had something to look forward to” code for a road
trip. He would pack the van for days in anticipation of our annual vacations.

Jim was generous to a fault. He
would literally give someone the shirt off his back. He gave away valuable
musical instruments to other family members. He was stubborn and wouldn’t do
anything that was against his principals. He could be exasperating at times.

Vietnam haunted him. He was
mentally and physically broken by his time in the jungle. He had a fractured
neck that wasn’t treated until years later. He had PTSD before anyone knew what
it was. He suffered deep depression and had to be hospitalized twice.

Jim was intelligent, loved to read,
play video games, had a wacky sense of humor, was musically talented, and a
deep thinker. He believed in ghosts, the unexplainable, angels, God, and that
death was simply closing one door and opening another.

He loved with all his being and was
fiercely loyal to those he loved. He loved his boys, his grandchildren, his
parents, siblings, aunts, uncles, nieces, nephews, cousins, friends, and I
never, ever, doubted his love for me. He called me his bride, princess, honey,
sweetheart, but never called me Linda.

Of all the things I miss about Jim,
I think I miss our quiet times the most: drinking a cup of coffee and talking
about the mysteries of life. I miss the adventures, the comfort, and all the
things that made Jim the unique man who stole my heart and held it gently.

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Early Onset Alzheimer’s

This award-winning blog is a must-read for individuals experiencing early-onset Alzheimer’s. Less common than standard age-related dementias, early onset Alzheimer’s is virtually always a surprise to diagnosed individuals. Linda Fisher, blogger and author, knows the difficulty of this condition firsthand.

In her Early Onset Alzheimer’s blog, she teaches readers not just how to manage such a frightening condition, but also how to live life to the fullest. Her passion for helping others – showing everyone that life with Alzheimer’s is worth living – is a tremendous gift. Thank you, Linda!

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Early Onset Blog has received several blog awards. Due to new Google regulations, the links had to be removed. Past awards have included the #1 Health Blog , Top 10 blog in 2010, Top 25 Blog award in 2010, and a Top 50 award in 2012. We appreciate the recognition, but also understand the need to remove the links.

I went to sleep around midnight and woke up at 4:00 a.m. I tossed, turned, read, tossed, turned, and read some more. Finally more than t...

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Fisher began her online journal to share her experiences with families affected by early onset dementia. Her essays provide insight into family life often from a humorous viewpoint. She writes from her experiences as a longtime Alzheimer's Association volunteer and advocate and ten years as a primary caregiver for her husband, Jim.

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Thank you, Lindsay, for your kind words and for including the Early Onset Blog on your website.